This time it’s personal

So I am around half way through the first week of the first cycle of three (or possibly four) of chemo, with the possibility of radio therapy to follow – if you say it quickly, it doesn't sound so bad….

I have had a look back over the most recent set of posts and realised that I haven’t mentioned the drugs I am privileged enough to be receiving (I mean that, all you Americans – the NHS is great).

I am receiving a GemCis combination – Gemcitabine and Cisplatin. For those of you with long memories, (or the facility to scroll down the page) you will notice the similarity of drugs to last time – Capecitabine and Oxaliplatin, and with that similarity in names you will see a similarity in symptoms and side effects.

Both of these are administered as a drip. This means that I have a single day treatment at the Edinburgh Cancer Centre at the Western General. It is an all-day stint, starting in the morning. It starts with a bag of saline solution (1 hour) followed by some steroids. This is closely followed by the first of the Chemo drugs – Gemcitabine. by this time i have had three cups of tea and am ready to go to the toilet – which I am doing more frequently anyway – so I end up taking my pump and drugs for a walk to the toilet with me.

After this I have another saline (or glucose – can’t remember) drip, which takes 2 hours. I have no idea why that one takes so long. After that there is the second chemo drug – Cisplatin. The two chemo drugs take about 15 minutes each and there is about 5 hours of saline/glucose/flushing going on around about them – but someone brings you tea and biscuits so it isn’t all bad.

I have the same anti-sickness drugs and (more) steroids as last time, for three days, to take the edge off the chemo.

Now, of course, I remember that the steroids do really strange things to my sleeping – wide away at 4 am on Thursday morning, and when I do get to sleep, the dreams can be weird and wonderful – maybe just weird though. After that the drugs do kind of take control and it isn’t so bad, although I don’t remember being so tired last time so quickly.

I finished the first round of chemo/steroids/anti-sickness yesterday – and yesterday evening was not much fun. Neither was today at church. The meeting hall was very warm and I kept getting worried glances from Katie (on my left) and Helen (on my right) about the colour I was going – they were obviously worried about my catching an infection, so I can’t complain too much though.

My sense of taste has also been affected. I constantly have a yeuck taste in my mouth and can only taste stronger food – I had fruit salad for breakfast and could only taste the pineapple, although apparently grapefruit also tastes normal. Orange juice on the other hand is just foul. Surprisingly, my sense of smell has been unaffected, Anyone who drives through or lives close to the west end of Edinburgh will not forget the malt smell from the brewery – that was just as fragrant as ever today.

So it is a waiting game again until Wednesday, when I get to go through it all again. I will see how I get on tomorrow at work (yes I am still trying to work, at least part time anyway).

I have just realised that I get to have chemo on my birthday this year (16th of February, if you want to send a presie) – maybe if I play my cards right I will get a second birthday, like the Queen or Paddington, later on in the year – maybe in April, since no-one else in the family has a birthday that month.

 

Enough – off to watch the telly now.

Gob bless

Graham

p.s. oh yes, I have been constipated too (sorry, just had to throw that in)

p.p.s Happy 18th birthday to Sean

Endings and Beginnings

The more observant among you will have noticed that it is now march, spring is springing, birds are singing and the sun pokes its head out now and again. You may also have noticed that it it almost two months since I last posted. I just never seem to have the time now – there is always something else happening – normally work or sleep!

So what has happened in the last two months? Well there is a new American President, the worlds banks are slipping evermore into disaster, I have had another birthday and finished my chemotherapy.

I know, I know. I was planning to do a daily post for the last two weeks of the chemo, but after the last session I just started to get on with life, and soon the time just slipped away – you wouldn’t have wanted to hear me going on about it all anyway, but I suppose a bit of news might have been nice.

I would like to thank all the people that have been asking after me when I was too lazy to post – you know who you are :-)

The last post I made was fairly brief, in fact you might say that it was downright rude in its brevity. At that time I was into my last few days of treatment and I could barely stay awake to write.

Looking bake it has all slipped away so fast, and yet the effects are with me all the time, even now.

So some details then, I finished taking the drugs on 27th January and on the same day had an appointment with my consultant, Dr Phillips – coincidence that it was the same day though. I was due to have a colonoscopy on the 29th at SJH. When I saw Dr Phillips, he postponed the colonoscopy as it was too soon after the end of the chemo.

The appointment was rescheduled and the next day I was also sent an appointment for a CT scan, the day after the re-scheduled colonoscopy.

(time passed)

I had my colonoscopy last week, Monday 9th to be exact. I had the CT scan on 10th and finally met with Dr Phillips again on 17th.

The upshot of all of this was that he has said that everything looks normal. During the colonoscopy a few biopsy’s were taken and I am still waiting for the results of them, but the colonoscopist(?) was happy that everything was normal and was just being safe – I did get slightly worried about that, but that has kind of gone as the days have passed I will not get those results for another week or two.

As I said, the next day I had a CT scan. The results of that are that a few of the lymph nodes are slightly enlarged, but are unchanged since my first ct scan last June, the day after my operation. Since they are unchanged Dr Phillips is not worried about them.

I have been released until September, when I will have another CT scan and another consultants appointment.

So, that is the timeline and the outline of what has happened. In some ways, stopping the chemo has been a bit of a damp squib – it was just another day. I took photos of my last dose of drugs (planning to post them here) and then went to work. It has all passed way without anything to mark its passing. On the other hand I suppose that it is good that it has just gone away – it has been such a part of life for the last six months it seems odd not to have to remember to take the tablets. I still expect to have to take them now and again and then remember that I don’t have to.

I still have some of the symptoms – in fact the symptoms are worse now than they have been all the six months that I was taking the tablets.

The main effects now are that my hands and to a lesser extent feet are sore all the time – any time i move them in fact. I can’t do buttons or other fiddly things and my hands have swollen so that I can’t wear my wedding ring – although that may just be because I have put on weight! it is very wearing to have sore hands all the time – I guess that arthritis sufferers have this all the time too, bit this is a different type of pain from that.

I cannot feel properly with my hands -  and when I use my hands i have pain in them – I can feel it just now as I type. My writing is terrible because I can’t hold a pen properly and i just try to not use my hands if possible (which is not very realistic as it turns out). I seem to be more clumsy in general, occasionally staggering and dropping things that I wouldn’t have done before. I guess that these are symptoms of nerve damage (I think they are similar to the symptoms that my sister had when she was diagnosed with freidrics ataxia, although the cause of mine is quite different from hers).

I try to keep quiet about the pain – it is there all the time, but people (including me) get bored with continuous complaints about the same thing. I just try to get on with life as best I can. In the end, if I come out of this with slightly painful hands, I think I have probably won.

I have put on weight (hmmm, I’ve heard that before) since I finished. I have noticed that my clothes are a bit tight around the middle now. I have made several promises to myself (and broken then already) to stop eating so much and to get out walking/running/cycling more now that the days are getting longer.

(another much shorter break)

I wrote the last part one night when I could not sleep. I have just read it again and I actually think it makes a reasonable amount of sense.

Each day is different. My hands are still affected by the cold. I feel the pain every day, but some days are worse than others – mainly when the weather is old or damp (or both). I am hoping that are the weather gets warmer (!?!) the effects will get less.

Having said that, I know I have said it to some people before, but if I come out of this with sore hands, I think I will probably have won.

13 days to go

I have thirteen days of treatment left, assuming I don't miss a day by accident - which sometimes happens at the weekends when our normal routine goes to pot. I have started taking the capecitabene and the steroid drugs- and was awake until 4.30 this morning :-(

We went to see the genetics councillor today, at SHJ - and found out that her son is in Claires' music class - small world.

The main thing to come out of today is that the kids have a slightly increased risk of this, but because there is no family history apart from me, there is not a major problem. They will be offered a colonoscopy in the future - probably in their mid-thirty's so there is no rush.

I am going to get them to check my blood for a particular marker which may indicate something hereditary, but even then the kids won't need to be tested for another ten or fifteen years. I suppose that my brother and sister may be interested, so I will get them the information when it comes to me.

I have started to get the main symptoms now. I have the tingling in my hands and feet when I come into contact with anything cold, like the laminate flooring! obviously I have had problems with sleeping (caused by the steroids). I am hoping that taking the second dose in the middle of the day will mean that I don't spend the entire night awake again. I don't think I have been overly grumpy this time, but is is early days yet - that could arrive any time until the beginning of next week along with the tunnel vision and other side affects.

well, that is enough just now. I will update again tomorrow.

god bless
Graham

I'm back

This post has details of the nasty side effects of the drugs I am due to get - if you are squeamish go here.....

Well we went along to St John's Hospital (which I will now shorten to SJH) Chemotherapy department this afternoon, for a meet and greet.


This was another session where they went through all the side effects of the two drugs I am due to get from next week - it is all starting to seem a bit scary........


I have just had a scan through my previous posts to see if I mentioned which drugs I get and I can see them (although maybe I just missed that bit). Anyway, here goes.

I am due to get a regime called Cap/Ox - short for Capecitebine and Oxaliplatin

I start off with Oxaliplatin, once every three weeks, at the chemo department at SJH where they put me on a drip for a couple of hours. They give you a hand leaflet detailing all the side effects. If you don't want to know the score, LOOK AWAY NOW (sorry)

The first one mentioned is diarrhoea - a bit ironic really. Next up Stomatitis or mouth sores and ulcers. Next, the ever popular Nausea and Vomiting (although they give me even more drugs to stop this one). There are dire warnings about infections and how I will be more susceptible to them - reduced blood count and all that. After this, the perennial Tiredness (it is not an excuse to get out of the hoovering, honest).

Finally (for this drug) the interesting one. Neuropathy. This drug affects the nerves (don't sneak up behind me) and this shows itself as numbness or tingling in the fingers and toes. this can be triggered by exposure to coldness and they recommend that I stay away from cold areas, chilled foods and cold drinks, to the extent that opening the fridge to get something out can trigger it. They suggest getting an oven glove to get things out of the fridge(!) and wearing a scarf and coat to avoid sudden gusts of wind, even next week!

It can also affect the nerves in the throat, causing a feeling of breathlessness and anxiety at not being able to breath properly. In fact, it does not affect the breathing in the slightest, but apparently it can feel that way. Scraping the car in winter may be fun and as for frozen peas (that was pea not pee, disgusting boy)..... This lasts for a few days after the treatment ends (so that will be a two or three days every three weeks).

So much for Ox.

Capecitebine is given as tablets every day for two weeks. based on my height/weight I will probably be on 4 - 5 tablets in the morning and the same in the evening - if you shake me I will probably rattle. So how does this one affect me?

Well there is diarrhoea, stomatitis, nausea and vomiting, higher risk of infections, tiredness (sound familiar?) The different one for this drug is Palmer/Planter Erythema, or red and sore patches n the palms and soles of the feet.

Oh yes, and I shouldn't become pregnant as there could be complications !?!

After that I get a week off before it all starts again. Apparently the effects are in the shape of a cosine graph (start at the top, go down in a graceful curve until about day ten when I start to fight off the symptoms and the curve starts to climb again) over the three week period (convenient really). I am not sure however that the graph ever gets as high as at the start.

The risk of infection is stressed a few times. If I get any sort of infection then it is a drop everything and run situation. I have programmed the numbers of the SJH department and the Western department into my phone in case of dire emergencies, so if I am with any of you and I start going blue and drooling at the mouth, grab my phone and call the hospital at once (OK, I am unlikely to turn blue and start drooling, but you get the idea - watch out for me :-) )

So that is it for the chemo drugs,, but they give me three, yes, three different anti-nausea drugs "just in case". And if none of them work I can call them and they will give me another one that they keep in reserve for stubborn patients.

OK that is enough for now. I am off to watch my symptoms DVD (oh yes, they gave me a DVD too).

Someone tell the others they can look back now.